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I would like to make it clear that I played no part in instigating a Facebook uprising over my research (Nature 472, 410–411; 2011).

I am not an activist but a scientist who has published 27 peer-reviewed studies of chronic cerebrospinal venous insufficiency (CCSVI) and its relationship to multiple sclerosis in 18 interdisciplinary journals.

This research was funded by the Italian government and banking foundations, and grants were peer-reviewed by scientific committees under the usual rules.

I do not believe that Facebook can influence the diversion of funds to change research priorities or the judgement of the scientific community.

CCSVI is a pathological condition first described in the literature two years ago. A Google Scholar search reveals that CCSVI has been cited more than 2,000 times in published scientific papers. Evidently, CCSVI is a hot topic—it is interesting precisely because it is controversial.

Lyon wrote: Dr Zamboni's responses seem out of place because he's defending himself against claims that were never...

Is he defending himself or just answering a question? Without seeing the whole transcript of his interview I would hesitate to saye he's defending himself. Was the question: "Did you have anything to do with the CCSVI Facebook pages that are popping up like wildfire?"

most magazine articles are written based of long interviews, and of course most of the direct questions are never put in the article, just the interviewee's responses with little to no context around the direct quotes.

It's all good, I enjoy a good debate and try to not take things personally.

If it involved no zamboni interviews, where did his quotes come from?

You make the observance that he is defending himself of claims not made in the article. What prompted his quote and if he wasn't interviewed did he just post this himself completely unprompted? I would think he has been accused and his words were most likely in response to those accusations. I'd be curious to get the whole picture on this.

I think the quotation appearing here in red is absolutely true. The reverse also, because controversial and hot topic mean the same thing. Maybe it would be better in Italian. The reasons for it being controversial, though, include some rather un-scientific behaviour and interests. The people pursuing these interests have the people with CCSVI at the bottom, and money, power, and prestige at the top, in their list of priorities. Science ranks second last. If it were not for these people and this behaviour, not only would CCSVI not be nearly as hot a topic, but also more than a few more people would be alive today, in my opinion.

I started the CCSVI in MS Facebook page in August 2009 (you can see it was Jimmy's suggestion from her link -- her fault!), just so I could link the research online. I have no internet prowess, didn't want to host a web page, and was already on Facebook as an individual. I didn't know what I was doing, set up the page as a "local business" because that was the default option. (It's since been changed.) Those who are interested can read the first notes. We had about 15 members, all from TIMS, and we just posted research and links to papers. I asked Marie to come on and help out in 2010 when things went crazy after the CTV special on Zamboni.

I've read the whole Nature article, and have a copy, and won't copy it over here...BUT even though it doesn't say Zamboni was directly behind the Facebook activity, the implication is that the interest in the research is being manipulated by activists online, and funding will be diverted due to these activists...I suppose that might be more of an issue in Canada, where the CIHR voted last summer to block all treatment trials. In the US, it's not as big an issue, because we have clinical trials and doctors treating with IRB approval. None of the angioplasty trials have received any MS Society or governmental funding, and are all privately funded, so the point is kinda moot. The diagnostic studies are being funded for about 2 million, a drop in the MS Societies' buckets...

Hindsight is always 20/20, but I don't regret linking the research and getting other doctors involved. Never expected medical tourism and lack of follow-up care, didn't see that one coming. Zamboni's a good doctor, he was answering the innuendo. CCSVI will continue to be defined by the researchers, not the patients and caregivers. Which is the way it should be,
cheer

Jimmylegs, I never knew of your role in the genesis of the Facebook page!

CCSVI is a pathological condition first described in the literature two years ago. A Google Scholar search reveals that CCSVI has been cited more than 2,000 times in published scientific papers. Evidently, CCSVI is a hot topic—it is interesting precisely because it is controversial.

I think he is talking about it as a hot topic and controversial among scientists, thus resulting in the 2000 citations.

Without patients picking up on his research, Dr. Zamboni would have continued with what he was doing, which was steadfastly rounding out his theory and the use of endovascular intervention. We would not have had Dr. Dake or Dr. Sclafani or Dr. Siskin or Dr. McDonald getting into the fray when they did, without the push from patients. Without them, ISNVD would not have gotten going. Was Dr. Zivadinov's interest in this before it got picked up by patients? If so, we would still have had him confirming the discovery by Dr. Zamboni that there is a greater incidence of CCSVI in MS.

We would still be along the path of discovery but maybe we'd be going at it at a slow pace instead of accelerated.

Dr. Zamboni never intended to start a wildfire. But it would have been possible for the light he lit with his discovery to go out unnoticed. That is no longer possible.

the conviction of most MS researchers that the lack of interest is warranted.

a portion of SIR's statement on CCSVI in MS:

5. SIR strongly supports the urgent performance of high-quality clinical research to determine the safety and efficacy of interventional MS therapies, and is actively working to promote and expedite the completion of the needed studies.

SIR believes that the completion of high-quality studies on CCSVI and interventional MS therapies should be considered an urgent research priority by investigators, funding agencies, and MS community advocates. SIR, through its Neurovascular and Venous Service Lines, is moving rapidly to catalyze the development of the needed studies by bringing together expert researchers in imageguided venous interventions, neurology, central nervous system imaging, MS outcomes assessment, and clinical trial methodology.

Lyon wrote:Isn't accepting that as a valued opinion a little like asking the distributors of patent medicine whether their salesman should be believed?

Again and again and again we all read here that we shouldn't trust what the pharmas say because they stand to profit, yet, to some degree, we are seeing the transfer of the "cash cow" of the Neurologists to the Interventional Radiologists and we should trust that the IRs which compose the SIR don't find feeding their families in their best interest?

It should be accepted on faith that IR's by nature aren't as bereft of morals as we are continually led to believe that Neurologists are?

I don't know what those poor misunderstood neurologists and pharmaceutical manufacturers would do if they didn't have you out here on the front line defending them against the onslaught of bits coming their way from the Internet. Formidable foes like the ones you attack here, had better beware, when you are on the warpath. They might have a chance at doing some good, and we can't have that, now, can we?

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